Cheer leading

Katie is absolutely ecstatic to be taking a weekly cheer leading class!  Having a physical outlet like this is excellent for her and she grins from ear to ear the whole time.  She does have a little trouble paying attention to the coach sometimes, because she's busy spinning or dancing around, or watching to see if I'm watching her.  She gives it her all, even though it is clear she's not the most coordinated in the group.  You can see some of the lack of positional awareness and gravitational insecurity, but none of these girls are particularly graceful, so she doesn't stand out too much.

Insurance Frustration

Got a letter from the OT clinic today saying they received a denial from the insurance company for more OT services for Katie.  SPD does not have the same sort of recognition as other issues, so all the insurance looks at is the physical issues (delay in motor skill development), and Katie did too well to meet their standards for needing care.  Ugh.  Now to find somewhere else to get some help...

Re-Evaluating

Took Katie back to the Katie Lady yesterday to be re-evaluated to be covered for some more OT.  Her first round of OT was summer of 2010 and discharged when she started Kindergarten.  She has done really well for about a year, but now in the last couple months we've been having a lot more of the old-style meltdowns again, so I wanted to see if more OT could help at all.  The problem is that since SPD isn't quite considered a medical condition, OT has to be submitted/billed as fine or gross motor delay, rather than the sensory problems.  Yesterday Katie performed a lot better on the gross motor tests than Katie Lady had expected (guess she's made a lot of progress in the meantime!), so she is not sure if her evaluation will be considered enough to qualify for the services.  Now we wait and hope.

I think it's also time for me to look for a psychologist for her to see as well.  Anyone have any recommendations of someone familiar with SPD?  It's so hard to know just which symptoms/behaviors are specifically caused by sensory issues and which are issues of the control that she feels she needs because of the instability of her experience of the world because of the sensory issues.  Katie Lady suggested that maybe some of the behaviors are now learned responses that began when she had no better tools of expression, and continue now, even though they are out of proportion, because she hasn't learned alternative ways to express herself.  So some sort of behavioral therapy might be the thing to give her skills to regulate her emotions.

Whoa! Flashback

Had an episode this afternoon that felt like we were right back to where we were two years ago.  Katie came home from school and immediately demanded that I put on a particular DVD.  The show I was watching was not quite over, so I told her it would be her turn in 10 minutes.  She was not happy with that answer and began fussing and yelling at me, so she was escorted to her room (not very gently I'm afraid, I admit I got mad in a hurry).  She continued to scream and carry on while I watched the remainder of my show.  I wanted to just leave her to work it out and settle herself down, but I could hear things crashing and being thrown, so I went in to try to talk to her and keep her from doing any actual damage. 

I went in and sat down without saying anything to her.  She glowered at me and made a show of tearing up a piece of paper and throwing the tiny bits as far as she could, then picked up some toys and started throwing them around.  OT taught us that deep pressure touch and joint compressions can help to calm her body down and reset the switch, so to speak, on her level of arousal.  I told Katie it was not ok to throw things in her room, that she needed to control her body, and that I would help her if she was unable to do it on her own.  When she chose to continue throwing things and yelling at me, I took her into my lap and held her in sort of a bear hug to provide some of that calming pressure. 

She cried and threatened to do every naughty thing she could think of, "I am never going to settle down!"  "I am going to break all my crayons in little pieces all over the room!"  "I am never brushing my teeth again!" etc, etc. and I just held her silently.  I told her I would talk to her when she was under control, and then just waited, all the time wondering if I was doing the right thing.

This hug was meant to provide that deep pressure and joint compression, but I know there have also been times and places when it can be argued that a restraining hold on a child can be abusive.  That certainly wasn't my intention, I just really wanted to calm her overwrought system. There are autism spectrum kids who are rolled up in mats, or pressed with large pillows as part of their OT, and Temple Grandin's squeeze machine was created for this very purpose, so I thought this should be ok.

I don't even remember how she eventually wound down.  I tried to get her to try some deep breathing with me, but it only made her mad and she says she can't do it when I'm trying to show her how, that I should leave the room and let her do it by herself.  The storm was calmed enough by then that I agreed to do that.  The whole thing had lasted half an hour. 

I left the room exhausted and discouraged that we were back to having those kind of melt downs again.  I had thought we were doing better.  Disappointed with the way I'd handled the whole thing, feeling like I should be able to manage this better by now, that I should have been able to calm it down faster. I still have so much to learn.

Swimmin' Like A Fish

Another huge improvement this summer is Katie's confidence in swimming.  My mother has a pool at her apartment and the girls have gone swimming with her a few times without me, and suddenly almost all of Kate's clinging anxiety in the water is gone!  She like to wear arm floaties, but says she doesn't need the swim vests anymore.  In Grandma's pool she will swim the entire length down to the 6' mark and back (of course I always stay close when she goes that deep).  She has been attempting to float on her back, though that is still pretty scary when her head actually hits the water, but she tries!  For the past several years she has always insisted that I actually hold her whenever we were in the water, or that she at least hold onto one of my arms the whole time. 

Last time we were at Grandma's pool with all the cousins I was bouncing Kate up in the air a little, in and out of the water, when I accidentally threw her a little too high and she went under when she came back down (though only for a second, as I pulled her right back up).  It startled her, of course, but she didn't freak out or cry as she surely would have before.  She was actually pretty proud of it and wanted to know if everyone had seen it!  She nervously allowed me to do it two more times to show Grandma and an Aunt.

Our apartment complex has a pool as well and this summer is the first I've been able to take the girls and let them play in it without having to be in it with them.  They both stay safely in the 3' end and just sort of bob around. Katie is even willing to forgo the floaties in our pool now and is very proud of being able to walk around all on her own,  especially since big sister Melanie refuses to.  It is so nice to be able to just supervise their water play without having to be Katie's anchor the whole time anymore!

Catching up to date

Wow, it's been way too long between posts!  We were without internet for the whole month of June and then had out-of-state family visiting for a week, and now it seems July has almost gotten away from me as well!  We've been having a pretty good summer.  Quite a difference from our struggles last year and the memory of the bad times are already fading.

This is the first year Katie has had the coordination to pedal her bike!  Until now she would only sit on her tricycle and push it with her feet on the ground, like a young toddler does. Now she's outgrown the tricycle and moved up to her sister's 2-wheeler (with training wheels).

She is still rather nervous getting on and off, as it is unstable and wobbly, and she  insists that I hold on to her or the handle bar to help her feel steady at first, but after she has ridden for a while she feels confident enough to go on her own.  We don't really have a very good area for her to ride at our apartments, just the parking lot and garage area, which are incredibly uneven.  So she has a hard time keeping herself going sometimes, and once she loses her initial momentum it is hard for her restart, lots of frustration, but also lots of pride!  She really took off when we took the bike to my sister's house with a nice long, even sidewalk! As I write this I'm feeling a bit guilty because she was really making progress, but now she hasn't ridden for several weeks.  I'll have to get her back out there because she was really enjoying the confidence it gave her.

Diggin' the Dirt

The girls are getting a chance to try their hands at some gardening this year in my father's garden.  They planted peppers and tomatoes, as well as marigolds.  Katie prefers to take her sandals off and go barefoot in the dirt, but is then extremely cautious about where/how she steps, which exacerbates her issues with balance.  She came across a worm while digging and practically FLEW out of the garden, so fearful is she of the creepy, crawlies (especially since a certain sister told her some of them bite!)

Hadn't even thought about how her poor awareness of her position in space could influence her overall sense of direction, but the poor sweetheart had a very upsetting experience at Granddad's when she went inside to use the bathroom.  She made it inside successfully, but on coming back out she lost her way and couldn't find us again.  She finally called out for me and I could shout out so she could see us, but by then she was terrified and sobbing, thinking she'd been abandoned.  She said every way she went the fence was there and she just didn't know where we were.  I had to hold her tight for quite a while before she could settle back down, and it brought the evening to definite end for her as she had no further interest in activities after that.